Once Upon a Time: Autism

2003

Once upon a time, there was a mother who was blessed with a wonderful husband, and a houseful of precious children. The mother was very happy and content.  

Once upon a time, there was a mother who envisioned great things for her children. She imagined drivers’ licenses, high school graduations, colleges, careers, weddings and another generation of babies someday.

The mother spent her days caring for her children, watching them play and learn, amazed at their ability to absorb information from their environment. She often described them as little sponges, once upon a time.

But there was one child, the youngest boy, who was different than the rest. He had stopped absorbing information from his environment. The mother watched him regress, stop talking, and distance himself from his siblings, once upon a time.

Once upon a time, there was a mother who lay awake at night worrying and wondering, wishing, hoping and praying.

And the mother was afraid for her son, once upon a time.

Once upon a time, there was a mother who sat in a doctor’s examination room with her young son and heard the word: autism. The doctor asked the mother questions. The mother asked the doctor questions. The mother cried and asked God questions, once upon a time.

A mother's hopes and dreams for her young son’s future were dashed, once upon a time.

Once upon a time, there was a home filled with echoing, spinning, toe walking, irrational fears, a limited diet, erratic sleep patterns and unusual fixations. The same Disney songs and movie clips were rewound and played over and over again.

A mother prayed often, and begged God earnestly for patience, understanding, and wisdom, once upon a time.

Once upon a time, a mother rolled up her sleeves and learned to be more than a mother to her son. The mother became a therapist, a researcher, an advocate, a cheerleader, and a teacher. The mother fought hard to find all the help her son needed.

Once upon a time, there was a mother in a race against time.

The mother went to conferences and classes. She read books and made phone calls. The mother contacted professors, authors and doctors to ask about behaviors, therapies and outcomes. The mother left no stone unturned, once upon a time.

Once upon a time, a mother invited people into her home to help her son, and the boy made huge gains. The mother was optimistic and talked of “recovery”. She set goals for her son, and took data, celebrating every achievement.

Once upon a time, a mother and father emptied savings accounts, mortgaged the house, borrowed money, and did without many things to give their son every opportunity to be the best that he could be.

The mother went to I.E.P. meetings and learned acronyms like I.D.E.A., F.A.P.E. and E.S.Y. She found out about rights and responsibilities, privacy policies, inclusion, and the least restrictive environment. The mother felt overwhelmed, once upon a time.

But there were remarkable teachers, principals, speech pathologists, and one incredible occupational therapist that wowed the mother with their dedication and ability to teach, once upon a time.

2016

Once upon a time, a mother watched her little boy with autism grow into a young man. The young man functioned at a level far below his peers in many areas, but he was happy. The mother understood that her son might never drive a car, but he had learned to ride a bike! The mother knew he would never do calculus, but he was able to add, subtract, and multiply! The mother knew he probably would not date or marry, but he had real friends who liked him for who he was. And the mother was so proud of her son. 

A son taught his mother much more than she had been able to teach him, once upon a time.

Once upon a time, there was a mother who was blessed with a wonderful husband, and a houseful of precious children. The mother was very happy and content.   

An IEP Tutorial: 13 Tips

The Individualized Education Program (IEP) process can be daunting. I was very intimidated those first few years. I have been in some very tense meetings with less than desirable outcomes and I have been in some very relaxed meetings where everyone left with smiles. I have learned a lot and no longer feel sick before I go to those meetings these days. I have some words of wisdom for you if you are still struggling with anxiety before you go to those awful IEP meetings. Following are my tips. The first few are pretty basic and you’ve probably heard some of these before. But the bottom half of the list are things that are a little more unique I think. Hopefully, you can learn from my experiences and some of my mistakes and successes.

1. This is very important: Never go alone. Hire an advocate long before the first IEP meeting so that the advocate has time to get to know your child and his/her needs and the two of you have time to go over goals. I was so lucky because my son had a Board Certified Behavior Analyst working with him. She knew him very well and has come to almost every IEP meeting since he was five. There were many times when I did not know what to ask for or did not understand some of the jargon but our advocate did and my son has benefitted greatly from her expertise. If you absolutely cannot afford an advocate then find SOMEONE (even another parent who has already been through the IEP process and has some experience) to go with you so you and your spouse are not alone. An advocate can be intimidating (without being scary) and can make a lot of difference in how the IEP looks at the end of the meeting.

Tate with Dad's glasses and laptop

2. Educate yourself about the IEP process. Before you go to your first IEP meeting read a book about the process and your rights. I recommend the Wright’s Law books. This is doubly important to the parent who does not bring an advocate with them.

3. Be on time. It looks pretty bad when mom and dad walk in late. I usually try to be early. Because, in our first IEP experiences, meetings sometimes started late (due to missing equipment or people) and I had complained, I did not want to be the one who caused our meeting to be delayed. One time I actually had to rearrange furniture for a meeting; then wipe glue and glitter off the table we were to use before our meeting could begin. Every minute of the meeting is valuable. Sometimes substitute teachers have been hired so your kid’s teacher can be there.  

4. Do NOT let anyone rush the IEP process. If enough time was not allotted for the meeting then you can ask for another meeting. You have the right to call an IEP meeting yourself anytime you want one. Put your request in writing though because if it is not in writing then it never happened. My kids’ schools used to schedule one hour for our meeting, ninety minutes if I was lucky. We never got finished in that amount of time. Apparently, some IEP meetings only require one hour but teachers have told me some parents go into the meetings accepting what they are offered and giving little or no input. Don’t be that parent. You need enough time to ask questions, get the answers, and help plan the IEP. You know your child better than the teachers do.  

5. You may be hoping for the best but you need to prepare for the worst. Take off your rose-colored glasses but don’t wear your boxing gloves into the meeting either. Keep them hidden just in case you need them but don’t go in ready for a fight. Sometimes things go bad quickly and unexpectedly. My son started at a small rural school where I knew almost every teacher and staff member very well and considered most my friends. I never dreamed we would have any problems coming to an agreement over what my son’s IEP should entail. I was wrong. It only takes one person on the IEP team sometimes to stand in the way of progress. Your goal is not to intimidate anyone so behave humbly and keep a smile on your face if at all possible. Be friendly. Be nice. Be sweet. Be kind. Set a dish of chocolate in the center of the table. Compliment everyone. THEN if you cannot catch your flies with sugar, bring out the vinegar.

6. Go into the meeting with a list of goals you would like to see on your child’s IEP. The school representative will be bringing their own list of goals, and probably even a rough draft of what they want the IEP to look like. The Office of Special Education Programs (OSEP), which is part of the Department of Education, discourages schools from bringing draft IEPs into the IEP meeting but IDEA is silent on this. Coming up with a draft IEP before involving parents is mind boggling to me but it is common practice. You can find sample goals online or in the Wright’s Law books. And… IDEA does not limit the number of goals an IEP can have. I once took ten or twelve tentative goals to an IEP meeting and was told that the school typically only allowed three goals on an IEP. Don’t believe it folks. Your child is there to make progress. Set your expectations high.

7. Have your questions written down and take them with you. You don’t want to walk out of there and later remember all the things you did not talk about. It is important to ask things like, “How much and what kind of training will the para professionals have?” IDEA says that para professionals are to have ongoing education throughout the year. Sometimes that does not happen. Ask about lunch and recess. Ask who will have access to your child’s IEP. Privacy laws are strict and your child’s diagnosis or IEP may not be shared with all the people who work with your child. Initially, my child’s diagnosis and IEP were not shared with substitute teachers or specials (Music, PE, Art, Library) teachers. That was unacceptable. My son needed accommodations and modifications for many activities. He also needed help during fire drills, tornado drills… Protecting a child’s privacy at the expense of keeping them safe and educating them is ridiculous in my mind. Now we have to put it in the IEP that everyone is to be told. I actually try to make sure that even the janitors, secretary, the cafeteria staff, and bus drivers are told about my children’s disabilities. If it really “takes a village” then the villagers ought to be given a clue about their little charges.

8. Remember that the I in IEP stands for Individual. There may be very specific anxieties or behaviors that are unique to your child that should be addressed in the IEP. If your child does not communicate well then you need to ask for insist on a note coming home every afternoon telling about his/her day and answering some routine questions about their behaviors… If your child has dietary needs then those should be listed in the IEP… Social skills training might need to be a part of the IEP. Don’t let the school push you into signing a standard IEP with goals recycled from the last student who had a similar disability.

9. Take notes during the meeting or bring someone with you to take notes. Do not rely solely on the notes taken by the staff. I once got my son’s IEP in the mail and was blown away. It looked nothing like the IEP we had discussed and I had the notes to prove it. The school note taker will probably ask you to sign their notes. Don’t be afraid to ask them to sign yours as well. You might even want to exchange copies of notes before you leave the building.

10. Usually we accentuate the positives but not today. The IEP meeting is not the best time to boast about your child’s strengths and progress. The child’s strengths are mentioned on the IEP and that is enough. The IEP meeting is a time to examine your child’s weaknesses under a microscope and try to collaborate on how to help him/her make progress. Do not minimize your child’s sensory needs, behavioral issues, physical disability, social skills deficits, or academic limitations. The school psychologist and the others on the team may come prepared to talk up the progress and give your child a very limited amount of services. Don’t get caught in that trap.

11. You cannot make it about the money. The school may try to make it about the expense of the services your child needs but the law says that your child is to receive an “appropriate education.” Parents sometimes hear, “We don’t have that available” or “There is only one O.T. in our district and she has to serve the needs of all the kids that need O.T.” Here’s the thing: If a hundred kids need occupational therapy (for example) and the occupational therapist is spread too thin then the district SHOULD hire another O.T. but instead they often suddenly decide to graduate a bunch of kids right out of their occupational therapy sessions. It all boils down to money. Don't let your kid be the one that is pushed out of services they need. 

Science Experiment, Tate was in 3rd grade

12. Don’t be pressured or tricked into doing something you do not want to do. A lot of these educators have been doing this a long time. Most are honest and want what is best for your child. Some are not. I learned early on that when I heard the words, "promoting independence" or "facilitating independence" come from someone on the IEP team it meant that I was about to be told that they wanted to pull support for an activity or a class that my child currently had support for. Facilitating independence; Yeah, right. Call it what you want. It still meant my kid was going to be without support and floundering on his own. If you are surprised to hear that your child suddenly seems to make enough progress so he will lose para support for an hour, it could be that the school is struggling to find enough paras or the money to hire them. Make sure you do not agree to “facilitate independence” unless you are sure your child is ready for that. BEFORE you sign off on it, go and observe. Send your advocate to observe. Learn from one of the biggest mistakes I made early on in this game... No matter how many times you hear, “We can always add the support back in,” know this: you will have to fight tooth and nail to get back anything you let them take away. AND, you may not succeed. The goal for all of us is independence but don’t ask a fish to climb a tree! Some kids will achieve independence and some won’t. Asking a kid who is not ready or able to do the things they cannot do is cruel. If you feel pressured to sign something or make an amendment to the IEP, tell them you need a couple of days to think about it.

13. The squeaky wheel gets the grease. I hear it all the time. Other parents have asked me why my kid has more services than their kid or how I was able to get full support for my son. I first point to the advocate we have (Tip #1). Then I tell them that they have to make a lot of noise. For four long years I wrote complaint letters, sat in the principal’s office, made phone calls, took notes, and made a lot of noise. I also gave gifts, sent cards, volunteered in classrooms, bought school supplies and other things the school needed, and was very visible at the school. I can hardly believe it but some parents meekly take the services the school offer and ask for nothing more. They do not get involved or ask questions. I suppose that there are some wonderful schools out there where all the staff does what is best for all the special needs students. ?? I love my kids’ schools. I love my kids’ teachers. I love my kids’ therapists. I am happy with my kids’ IEPs and the services they are receiving currently. It took a long time and a lot of noise to get here.

If you enjoyed this post, you might also like 15 Truths of Parenting Special Needs Kids. 

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What brought you here?

This past month we visited a pediatric psychologist at Children’s Mercy to get a diagnosis for Tate that will be accurate under the new guidelines that are being used in the world of autism. In recent years, the American Psychological Association (APA) used a tool called the DSM-IV-TR to diagnose Autism Spectrum Disorders (ASDs). ASDs included Autism, Asperger’s Syndrome and pervasive development disorder-not otherwise specified (PDD-NOS). In May 2013 the DSM-5 was introduced as the new diagnostic tool. This manual has eliminated the three subgroups. Tate’s doctors have told us that the word Asperger’s will soon be obsolete. It is my understanding that the new diagnosis for a child with autism will be Level 1, 2, or 3, with 1 being the highest functioning and 3 being the lowest.  Tate’s new diagnosis is Autism Level 2.  For more information about the new terminology and the new criteria I found this article helpful: http://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria

Some think the motive behind the new criteria is to make it harder to get an autism diagnosis, thus bringing the alarming numbers down. I do not really have an opinion on the reasoning behind the change. I do hope that the new criteria will not harm the autism community and prevent children who need support from gaining it. 

In order to get the evaluation and the new diagnosis, the psychologist had to spend several hours with Tate. He gave her a pretty accurate picture of himself from the introduction. He asked, “Do you know what brought us here?” The psychologist assumed he was asking her to reveal the purpose of our visit and she said, “What do you think brought you here?”  He answered, “a truck.”  It got better (or worse depending on how you look at it).  While testing with Tate, she needed him to define words. When asked to explain what a car is for, Tate said, "A car is something you drive around in because humans are loosing the ability to walk." She asked him about posture and he started speaking gibberish. She asked him what he was doing and he said he was speaking Spanish, also called posture. When asked what an American is, Tate said, “When you are from America, you laugh a lot and smile and play in the sunshine. You also speak English or Spanish." So, he got that right! Ha. The doctor showed Tate a lot of faces that illustrated a lot of emotions. Tate failed to identify almost all of them correctly. The doctor asked him what a smile and a frown had in common and he said, “Both faces are round.” There were many, many more gaffes and blunders over the two days of testing. Some made us laugh and some made me want to cry.

Age 3

After all the testing, Shawn and I met with the doctor alone. The results and the recommendations from the doctor were both helpful and discouraging.  Going into Tate’s appointment for his diagnosis at age 3, and again at age 12, we had our eyes wide open. We already knew both times that he had autism and we had a long, hard road ahead of us. The difference between the first time when we heard the diagnosis “PDD-NOS” and the second time when we heard “Autism Level 2”, was that we had a lot of hope at age 3 that we no longer have nine years later. Originally, we fell hook, line, and sinker, for the idea that kids can “recover” from autism. We spent the thousands of dollars it took to get best-practice, early intervention. We spent the hours and hours it took to get Tate kindergarten-ready academically. We even made progress with a lot of social skills. We worked so hard and saw a lot of growth but we didn’t get the “recovery” that we had hoped for. I am still one hundred percent for early intervention and believe Tate is much less handicapped than he would have been without the hard work. Perhaps if we had not hoped for recovery we would not have worked so hard then. Perhaps if we had not hoped for recovery the reality would not hurt so badly now. I have learned not to dwell on “what ifs.”   

Regardless of what we call Tate’s disability, it is still the same disability and he is still the same kid. Tate still struggles in all the same areas. Tate still needs the same supports he did before the new diagnosis. We continue to make progress and I see it come in leaps and bounds sometimes. 

Age 12

Over the Christmas break, Tate’s oldest sibling, Titus, was home for a visit. He is sometimes able to explain things to Tate that I have been unable to. I told Titus we were working on teaching Tate about sarcasm. I know what you are thinking… Why would a Mom want to teach her child the art of sarcasm? Why would any mother in her right mind go out of her way to try and help her kid become sarcastic? Well, in the first place it is age appropriate. In the second place it is much like figurative language and joking that is over Tate’s head, causing him to miss out on so much of the conversation around him. Thirdly, we are constantly trying to make Tate see that not EVERYTHING has a concrete, literal meaning. Sarcasm almost always means exactly the opposite of the words that are actually used. So, Titus gave it a shot. He gave Tate a definition of sarcasm and some examples. Then we asked Tate to try. Tate looked confused. I said, “Tate, look at Sydney’s hair. It is a mess. What could you say about Sydney’s hair that would be sarcastic?” Tate responded, “Sydney, your hair is sarcastic.” Lesson fail!! I’ve been hammering away at it ever since though and pointing out sarcasm whenever we use it or hear it. Sunday, we sang a really short hymn in worship and Tate leaned over and whispered, “THAT was a long song.” Then he looked at me and smiled. Now, normally would I praise one of my children for saying something sarcastic about a worship song? Would I ordinarily get excited about whispering and joking during worship? NO! I would not. BUT… I almost came out of my seat I was so ecstatic. I pulled Tate over to me and excitedly whispered, “Tate! That was sarcasm! You did it! You said something sarcastic! Good job!” I know that eventually I will probably regret these lessons in sarcasm. I know this because four of my seven children are now sarcastic, young adults who did not need my tutorials to become that way. I had a shot at mothering a child without ever having to hear those sarcastic comments that come so easily to the others, but I am a glutton for punishment because just today I said something sarcastic to Tate and then said, “Did you hear that Tate? That was sarcasm” and he smiled. 

This is another post you might enjoy about language: Who's on First?

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Notes from Tate: Part Two of Three Steps Forward and Two Steps Back

STOP! If you haven't read the last post (yesterday's post) then this one will not mean much. So click on the purple link, read it, and catch up! Thanks for joining in my "fun" with autism.

We are one day into the elimination of fantasies and Tate is doing very well. He is past crying and seems to be okay. He is not verbally arguing but still he seems to have gotten the last word. Ha!

In the past, on occasion, when Tate feels the need to argue with an adult but knows he will be stopped, he has written notes. The first note I ever remember him writing was around third grade and he was upset with a teacher. He wrote her a note to continue an argument that she thought she had won. He’s been writing notes ever since. Not all of them get delivered but it may be a good release for him. I’ve written my fair share of notes to school board members and various others that I never sent. Now I blog for therapy. Ha!

Last year, Tate wrote a couple of notes to his well-loved para to fire him from his position because he was asking Tate to do things that Tate did not think were “worthy” of him. Things like reading and math. Ha! We explained that students cannot fire school staff and then went around the corner and laughed hard. Three steps forward: Tate is initiating interactions with others, trying to advocate for himself, and using communication skills that are really hard for him. Two steps back: Tate is unable to “drop” the “argument” that he lost and is sometimes, boarder-line, disrespectful, both typical of autism.

Following is a note Tate wrote to his Dad regarding the babysitting service he wants to open based on a television show scenario. It was in a folder at school and the para sent it home so we could see it. We’re not sure when he wrote it.

Dear DaD I thank I will Be a GOOD BaBY SiTer  The BilDing Will Be a wonDerful Place and I canT waTe To Be a Bother [brother] and Manager  We Will have Dinner every Day aT 4:00  I We will come and viste you MosT oF The TiMe  Winever the Kids GeT sik I will TaKe them To The DoTer and Me and SiDNey Will Go To the Computer every Day at 5:00  I will NoT Give UP intell This New Year’s Day From TaTe  PS I will aso BaBYSit NaNs KiDS and The aParTMenT Will Be for KiDS and animals Who Need a BaBYSiTer only

The reference to being a brother and a manager is from an unrelated joke we have also been trying to eliminate (also from a television show.) The joke is never delivered in a context that is understandable to his “audience” and only makes Tate appear very odd. I have been trying to extinguish this one for two or three weeks and Shawn addressed it when he spoke to Tate about the inappropriate fantasies and stories he has been telling people. 

Three steps forward and two steps back.